Epidemiologist Paul Garner has been very helpful for us writing in the BMJ about his anger at being recommended GET and CBT

[Woodyrob]

The reputable Epidemiologist Paul Garner has been very helpful for us writing in the BMJ about his anger at being recommended GET and CBT after appearing to have developed ME/CFS from Covid. https://blogs.bmj.com/bmj/2020/09/0...t-try-and-dominate-this-virus-accommodate-it/

And during the 6 months of no recovery from Covid Paul has been talking to media all over the world about us ME/CFS sufferers and long haul Covid sufferers plight. Telling them “research is needed now”... “ME/CFS information isn’t properly displayed on the NIH website” etc

However by mistake he just tweeted a recommendation by the infamous Psychiatrist Simon Wessley (The man who held back biological research for over a decade due to the Pace trial recommendations and that ME/CFS “patients didn’t want to get well”) Pauls retweet of Wessely’s was about graded exercise.

Paul Garner is a good man and new to ME/CFS. So can those of us informed (on Twitter) please politely tell him the history of Simon Wessely and GET here’s the link to his post.

https://twitter.com/i/web/status/1306519366259945473

Please be polite to Simon Wessely too, you can say how disappointed and appalled of course, but keep it above board otherwise Wessely will again choose threats against him to attempt to show we are a bunch of crazies.

 

[Pyrrhus]

However by mistake he just tweeted a recommendation by the infamous Psychiatrist Simon Wessley

I don't think he was tweeting a recommendation by Wessely. What happened was that a group of doctors suffering from Long Covid wrote a piece in the BMJ called "From doctors as patients: a manifesto for tackling persisting symptoms of covid-19". In this piece, the doctors with Long Covid said:

As Lynne Turner-Stokes, consultant in rehabilitation medicine, warned in a recent Royal Society of Medicine webinar,3 “Before we get people exercising, it’s important to be sure that it’s going to be safe. We need proper evaluation of cardiac and respiratory function, and we need to take things slowly and in a paced measure.”

Wessely then quoted this piece, contradicting all his previous statements promoting exercise. Paul Garner then agreed with Wessely's quote that advised against exercise. So effectively, the doctors with Long Covid managed to get Wessely to contradict himself, and then Paul Garner tried to push Wessely further by asking him to encourage people not to push through exercise!

Reference:
https://www.bmj.com/content/370/bmj.m3565.short

 

[Woodyrob]

Ah ok that’s good to know As I like Paul, however Simon Wessely starts defending himself in subsequent threads that came off Paul’s and the initial tweet. As people are complaining how Wessely ruined their lives. Quite entertaining reading the battles he’s falling into.

 

[Abrin]

Wessely then quoted this piece, contradicting all his previous statements promoting exercise. Paul Garner then agreed with Wessely's quote that advised against exercise. So effectively, the doctors with Long Covid managed to get Wessely to contradict himself, and then Paul Garner tried to push Wessely further by asking him to encourage people not to push through exercise!

That will certainly be a situation that it will be really interesting to see how it all ends up shaking out.

Good job to Paul Garner for calling Wessely on his B.S

 

[Art Vandelay]

Wessely then quoted this piece, contradicting all his previous statements promoting exercise. Paul Garner then agreed with Wessely's quote that advised against exercise. So effectively, the doctors with Long Covid managed to get Wessely to contradict himself, and then Paul Garner tried to push Wessely further by asking him to encourage people not to push through exercise!

I agree. David Tuller just briefed Prof Garner about the PACE Trial and the influence of the UK psychiatrist lobby, so I suspect this is why Garner was pushing Wessely to backtrack on everything he's said about GET.

https://forums.phoenixrising.me/thr...r-uk-docs-and-researchers.81345/#post-2297290

 

[Woodyrob]

I’m glad you guys spotted that because I read it wrong, so thank you for pointing out what Paul Garner meant.
This is great news then, that Wessely is in the headlights for his own appalling past. Reading the other threads off Wessely’s main Tweeted comment Wessely is now yo-yoing on what he actually means lol
A tad confusing though.

Still we need to hammer some home truths at Wessely politely as possible.

Also of interest Paul Garner is one if the founders of Cochrane Reviews the very group that said the PACE trial was ok. Although from my understanding Garner had nothing to do with that actual review

 

[Mary]

Paul Garner is a good man and new to ME/CFS. So can those of us informed (on Twitter) please politely tell him the history of Simon Wessely and GET here’s the link to his post.

I emailed Paul Garner several weeks ago after I saw his videos and his BMJ blog describing his post-COVID ordeal and his mentions of ME/CFS. I tried to outline a brief history of ME/CFS and the debacle of PACE. I gave him links to David Tuller's blog and mentioned Simon Wesseley, among others. And also talked about NICE guidelines and the Cochrane Review. I urged him to do whatever he could to see that the recommendations of GET and CBT for ME/CFS be removed from the NICE guidelines and Cochrane Review.

Much to my surprise, he responded to my email! He thanked me and said it gave him some information he didn't have previously.

Anyways, he seems like a very good ally to have in our corner!

 

[Abrin]

Much to my surprise, he responded to my email! He thanked me and said it gave him some information he didn't have previously.

That is amazing! Thank you so much for emailing him.

 

[Woodyrob]

That’s great news, I’ve been trying to contact him but no reply, so we’ll done!!!! Your efforts doing that may get some much needed help, because Paul really speaks his mind. I wonder if that BMJ blog of his aimed at GET was influenced by what he read after your email?

Hopefully he has some influence with Cochrane still because he helped establish the group. I haven’t heard about the recent Cochrane review on the PACE trial. Is that finished yet? I hope not because I can imagine Paul’s experience of ME/CFS could make them wake up to how flawed that PACE Trial actually is.

 

[Mary]

@Woodyrob - he was already writing about GET before I emailed him - he'd already run into it and said something like he didn't need help exercising! It was great. But I think I provided some background information he wasn't aware of.

Right - he has an affiliation with the Cochrane Group, though not the section which did the PACE review. I'm hoping he can have some influence with them. I don't know if the recent review is finished.

I emailed him again today after reading about Eva here - I passed on the story to him. I wanted to let him know that people have died or may die because of GET and CBT. I don't really expect to hear back, but you never know!

ETA: btw, I think I just got lucky that he replied to me - he must be inundated with emails etc.!

 

[YippeeKi YOW !!]

I emailed him again today after reading about Eva here - I passed on the story to him.

Oh, @Mary , thank you sooo much for doing that. I'm finding Eva's plight heartbreaking and infuriating, and having mailed a card to her a couple of days ago, am frustrated by how little can be done from over here. Or even, apparently, from Over There .....

ETA: btw, I think I just got lucky that he replied to me - he must be inundated with emails etc.!

Or maybe you stated the case so well and so precisely that he actually stopped to read it !!!

Good going, Mary !!!!

 

[Mary]

Thanks @YippeeKi YOW !! - Eva's story is heartbreaking and infuriating like you said, and I think would be unbelievable to a majority of people. I think most people don't have a clue what persons with ME/CFS go through with "medical care" and the incalculable harm wrought by Wesseley et al. I feel as helpless as you do. I hope Paul Garner takes the time to read Eva's story --